A Guide for Families and

A Guide for
Families
and
Caregivers
May 2003
Children’s and Women’s Health Centre of BC
Fourth Edition, 2003
The practices of nutrition support are continually evolving with new knowledge and
guidelines from expert authorities. This booklet is being published with the aim of providing
guidelines for tube feeding that are consistent with the most recent scientific data. Where
research is not available, the practice guidelines are the best as derived from the collective
experience of the health professionals at Children’s and Women’s Health Centre.
The development of these guidelines involved thorough and repeated review by health
professionals at Children’s and Women’s Health Centre in the fields of neonatology,
pediatrics, nursing, infectious disease, nutrition and public health. The input of these
professions has been invaluable and we are most grateful for their assistance.
The publisher is not responsible (as a matter of product liability, negligence, or otherwise) for
any injury resulting from any material contained herein. This booklet contains information
relating to general principles of medical care and should not be construed as specific
instructions for individual patients. Product information and package inserts provided by the
manufacturer should be reviewed for current information including contraindications,
dosages and precautions.
This booklet was developed and printed with the support of the Sunny Hill Hospital
Auxiliary.
All parts of this publication may be reproduced, stored in a retrieval system or transmitted in
any forum by any means – electronic, mechanical, photocopying, recording or otherwise –
without requesting the prior permission of the Nutrition Committee, Children’s and Women’s
Health Centre.
To purchase additional copies of this booklet call 1-888-727-7759, the Special Products
Distribution Centre located at Children’s and Women’s Health Centre.
Dr. Sheila Innis, Chair
Nutrition Committee
Children’s and Women’s Health Centre of BC
Tube Feeding at Home - A Guide for Families and Caregivers
May 2003
Page i
Children’s and Women’s Health Centre of BC
Table of Contents
Introduction: What is Tube Feeding? ........................................................................................ 1
The Digestive System................................................................................................................ 2
Gastrostomy and Jejunostomy Tubes........................................................................................ 3
Information about your child’s feeding tube ............................................................................. 4
Gastrostomy Tubes: G-Tubes.................................................................................................... 5
Low Profile Gastrostomy Devices............................................................................................. 6
Jejunostomy Tubes: J-Tubes ..................................................................................................... 8
Caring for the Stoma and Feeding Tube.................................................................................. 10
Checking the Stoma and Feeding Tube................................................................................... 12
Cleaning the Stoma and Feeding Tube.................................................................................... 13
Caring For The Mouth............................................................................................................. 14
Oral Stimulation During Tube Feeding ................................................................................... 15
Transition From Tube To Oral Feeds ...................................................................................... 16
Tube Feeding Schedules: Intermittent and Continuous........................................................... 17
Tube Feeding Formula ............................................................................................................ 18
Information about your child’s tube feeding supplies ............................................................. 19
Tube Feeding Schedule: Intermittent (Bolus) Feeding............................................................ 20
Tube Feeding Schedule: Continuous or Overnight Feedings ................................................. 22
Giving Tube Feedings ............................................................................................................. 23
Giving Medications through a Feeding Tube .......................................................................... 29
Tube Feeding at Home - A Guide for Families and Caregivers
May 2003
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Children’s and Women’s Health Centre of BC
Preventing and Solving Problems (Alphabetical Order) ......................................................... 32
Telephone Numbers ................................................................................................................ 48
Appendix A: Monitoring Progress .......................................................................................... 50
Appendix B: Ongoing Questions & Concerns ........................................................................ 52
Appendix C: List of Terms...................................................................................................... 53
Appendix D: Additional Resources for Families & Caregivers .............................................. 55
Appendix E: Reinserting a Gastrostomy Tube (G-Tube) ........................................................ 56
Appendix F: Reinserting a Jejunostomy Tube (J-Tube).......................................................... 58
References.................................................................................................................... 59
Tube Feeding at Home - A Guide for Families and Caregivers
May 2003
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Children’s and Women’s Health Centre of BC
Figures Table of Contents
Figure
Title
Page
1
The Digestive System ................................................................................
2
2
Placement of Feeding Tube........................................................................
3
3
PEG –Tube with Port .................................................................................
5
4
Placement of Feeding Tube ……………………………………………..
5
5
Bard Button……………………………………………………………….
6
6
MIC-Key Skin Level Device .....................................................................
7
7
J Tube.........................................................................................................
8
8
Radiologically-Placed Tube .......................................................................
9
9
G-J-Tube ....................................................................................................
9
10
Foley Gastrostomy Tube ...........................................................................
56
Tube Feeding at Home - A Guide for Families and Caregivers
May 2003
Page iv
Children’s and Women’s Health Centre of BC
Introduction: What is Tube Feeding?
Tube feeding is a way of giving liquid food (often formula) directly
into the stomach or small bowel. This formula provides the body with
the nutrients needed for good health. Tube feeding can be used for children
who:
•
Cannot eat at all
•
Do not feel hungry
•
Need extra nutrition – higher amounts of protein and calories
•
Cannot eat or drink enough regular food or fluids because they tire easily or cannot chew
or swallow well.
Right now, you might feel quite overwhelmed by the idea of tube feeding at home.
Please know that we will teach you what you need to know before you go home with
your child. You will also be able to practice your new skills before going home. Please
ask any questions or discuss any of your concerns with us. There is no such thing as a
silly question!
Please discuss
any questions
or concerns
with us.
The information in this booklet will help you to carry out tube feeding at home. Please
feel free to write notes or questions in it. It might also be helpful if you bring this booklet
to your appointments.
Tube Feeding at Home - A Guide for Families and Caregivers
May 2003
Page 1
Children’s and Women’s Health Centre of BC
The Digestive System
Figure 1: The Digestive System
Tube Feeding at Home - A Guide for Families and Caregivers
May 2003
Page 2
Children’s and Women’s Health Centre of BC
Gastrostomy and Jejunostomy Tubes
There are many different types of tubes used. The tube chosen depends on the needs of
the child. All of the tubes are soft with rounded tips on the end that is inside the body.
There are one or more openings, called “ports”, on the other end of the tube that is
outside of the body. These openings or “ports” are used to connect the feeding bag.
A gastrostomy (G-tube) or jejunostomy tube (J-tube) is a small soft tube that goes
into the body through an opening in the abdomen and ends inside the stomach (G-tube) or
small bowel (J-tube). The liquid food (formula) goes through this tube into the stomach
or small bowel.
Figure 2: Placement of Feeding Tube
Tube Feeding at Home - A Guide for Families and Caregivers
May 2003
Page 3
Children’s and Women’s Health Centre of BC
Information about your child’s feeding tube
Keep this page for
your records.
1.
Tube type and brand:
2.
Tube size:
3.
Health Care Provider that inserted the tube:
4.
Date the tube was inserted:
5.
Date when tube should be changed:
6.
Where to go to have the tube changed and who can change it:
7.
Other details:
Tube Feeding at Home - A Guide for Families and Caregivers
Write your
child’s
information
here.
May 2003
Page 4
Children’s and Women’s Health Centre of BC
Gastrostomy Tubes: G-Tubes
G-tubes are placed into the stomach and come out through the skin of the abdomen. They may be held in
place by sutures, an inflated balloon, by internal/external bumpers or by a disc.
Figure 3: PEG with Port
Different types
of tubes.
The tube chosen
depends on your
child’s needs.
Here are some examples of different types of G-Tubes:
„ PEG Tube (Percutaneous Endoscopic Gastrostomy)
This is a silicone tube inserted by a surgeon or gastroenterologist in a hospital. It is inserted under general
anesthesia or sedation. A surgeon or gastroenterologist will change the tube as needed.
Figure 4: Placement of Feeding Tube
„ Gastrostomy Balloon TypeTubes
Initially, a surgeon or gastroenterologist puts in these tubes. Gastrostomy tubes last from 6 weeks to 6
months depending on the tube. A nurse or skilled caregiver in the home or hospital can change them.
Tube Feeding at Home - A Guide for Families and Caregivers
May 2003
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Children’s and Women’s Health Centre of BC
Low Profile Gastrostomy Devices
These are small, flexible silicone rubber devices that can be put in surgically or can be
used to replace the original gastrostomy tube (described above). They are called “low
profile” because they are small and at skin level. They can be held in place by an internal
bumper or balloon.
Here are some examples of different types of gastrostomy devices:
„ Bard Button
A Bard Button is most often inserted into an established stoma.
It can last for about 12 months.
Figure 5: Bard Button
Tube Feeding at Home - A Guide for Families and Caregivers
May 2003
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Children’s and Women’s Health Centre of BC
Gastrostomy devices continued...
„ MIC-KEY
Is inserted surgically or inserted into an established stoma and lasts about 4 – 6 months.
These tubes can be changed at home.
Figure 6: Mic-Key
Tube Feeding at Home - A Guide for Families and Caregivers
May 2003
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Children’s and Women’s Health Centre of BC
Jejunostomy Tubes: J-Tubes
Here are some examples of different types of J-Tubes:
„ Surgical Jejunostomy Tube (J-Tube)
A surgical jejunostomy is a tube that is placed into part of the small bowel (jejunum) by a
surgeon. This tube will last about 1 – 2 years.
Figure 7: J-Tube
„ Radiologically-Placed Jejunostomy Tube through an established Stoma
Under local anesthetic, this tube is inserted by a radiologist in the hospital. It is changed
every 3 – 6 months.
Tube Feeding at Home - A Guide for Families and Caregivers
May 2003
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Children’s and Women’s Health Centre of BC
J - tubes continued...
„ Radiologically-Placed Gastrostomy - Jejunostomy (G-J)
Tubes
A radiologist in a hospital inserts these tubes. They are
inserted under anesthesia. These tubes are usually changed
every 3 – 6 months by a radiologist.
Figure 8: Radiogically Placed Tube
COMBINED TUBE:
„ Gastrostomy-Jejunostomy Tube (G-J Tube)
A G-J tube is a tube that is put through the stomach
via the gastrostomy into the jejunum. It is inserted
by a radiologist and is replaced every 3 - 6 months.
Figure 9: G-J Tube
Tube Feeding at Home - A Guide for Families and Caregivers
May 2003
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Children’s and Women’s Health Centre of BC
Caring for the Stoma and Feeding Tube
GENERAL INFORMATION:
•
•
•
•
•
•
•
•
The stoma is a surgically created opening on the skin where the feeding tube
enters the body.
Always keep the skin around the stoma and under the bumper/disc/button as
clean and dry as you can. The skin disc or bumper on the outside of the tube
should be approximately ½ inch (about the width of a dime) away from the skin.
Do not apply creams or dressings to the stoma unless your nurse or primary
health care doctor has suggested this. Most skin irritations heal quickly when left
open to the air. Creams and dressings stop the air from reaching the stoma.
Always make sure that the feeding tube is in the correct position before starting a
tube feeding or giving medication. To check the position of a gastrostomy tube,
gently pull back on the tube to make sure it is against the stomach wall and then
measure the length of the feeding tube that is outside of the body (see page 4 for
the length that it should be).
Wait at least 7 days after new the tube is inserted before swimming or bathing.
When you go swimming, tape the tube securely to your child’s stomach using a
waterproof tape.
The
BASICS.
Remember
washing your
hands is one of the
most important
steps you can take
when caring for
your child’s tube
feed.
Participation in sport activities is fine once the stoma is no longer tender. If there
is a hit to the abdomen, there may be some pain but it is usually not an
emergency unless the pain is intense or the pain does not get better. It is best to
have the tube checked by a primary health care doctor or nurse if the pain is
intense or does not get better or if there is any bleeding or bruising around the
child’s stoma site.
Children can lie in any position that is comfortable. It is best to try and prevent
babies and other children from pulling or playing with the tube. You can cover
the tube with an undershirt or sleeper. Try to keep the stoma and tubing outside
of the diaper to keep it clean.
Before you care for the stoma or tube - wash your hands! Washing your
hands can prevent the spread of illness! Washing your hands is one of the most
important steps you can take when caring for your child’s tube feed.
Tube Feeding at Home - A Guide for Families and Caregivers
May 2003
Page 10
Children’s and Women’s Health Centre of BC
•
When washing your hands please make sure you:
ƒ
Remove rings and watch. These can trap germs.
ƒ
Use warm water and regular soap and rub all parts of your hands and
wrists. Friction is the best way to get rid of harmful germs.
ƒ
Wash for 30 seconds. Hint: Sing “Happy Birthday
to You” (the whole song) and 30 seconds will have
passed.
ƒ
Rinse well. Leave the taps running and dry your hands with a clean towel.
ƒ
Turn off the taps with the towel.
Tube Feeding at Home - A Guide for Families and Caregivers
May 2003
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Children’s and Women’s Health Centre of BC
Checking the Stoma and Feeding Tube
GENERAL INFORMATION:
With every feed, check the following things:
A.
The Skin – Problems to watch for:
ƒ
Skin redness greater than 1/2 inch (1 to 2 centimeters) around the tube
ƒ
Tenderness, discomfort or pain around the tube
ƒ
Discharge (leakage) from the stoma.
ƒ
Swollen skin
ƒ
Bad smell
Î If you see any of these, go to pages 43 & 44 to find out what to do.
B.
The Tube:
ƒ
Check the feeding tube for any leaks or cracks.
Î If it is cracked or leaking, go to pages 40 & 41 to find out what to do.
ƒ
Measure the length (position) from the stoma to the end of the tube. Write this
number down. Compare the measurement to the measurement you made when
the tube was first inserted.
Î If it is shorter than it should be, the tube may have moved into the
stomach (see page 4) Gently pull on the tube until the internal
bumper balloon is snug against the stomach wall. Then measure
again to make sure it is the right length.
Î If it is longer in length, the tube may be coming out. DO NOT USE
the feeding tube. Call the nurse or primary health care doctor.
Tube Feeding at Home - A Guide for Families and Caregivers
May 2003
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Children’s and Women’s Health Centre of BC
Cleaning the Stoma and Feeding Tube
GENERAL INFORMATION:
Keeping the skin clean and dry helps avoid skin irritation and breakdown. Usually you
will clean the stoma and tube twice (2 times) each day. Using a clean wash cloth or
cotton ball, wash the skin around the tube with mild soap and water. Also clean the skin
anytime there is leakage around the tube.
HOW TO CLEAN THE STOMA AND FEEDING TUBE
(The nurse will check which steps should be followed):
Step 1
Prepare and clean work area, and wash your hands! Washing your hands
can prevent the spread of illness! Washing your hands is one of the most
important steps you can take when caring for your child’s tube feed.
Step 2
Gather the equipment:
†
†
†
†
†
Clean wash cloth
Cotton balls
Cotton tip swab (Q-tip)
Mild Soap
Warm water
† Other: ______________________
Step 3
Wash your hands again before touching the equipment and patient/child. Gently lift
the sides of the disc or tube to reach all areas of the skin. Do not pull hard on the
tube. This can hurt the inside of the stomach or intestine.
Step 4
Use a cotton swab or Q-tip to gently clean under the disc or around the tube.
Step 5
Clean the outside of the tube with soap and water.
Step 6
Rinse the skin with warm water. Pat the skin well with a soft towel or leave open to
air.
Step 7
Seven days after having a gastrostomy tube surgically inserted, your child can soak
in a bath tub or go into a swimming pool. The tube and stoma can be easily cleaned
in the bath tub.
Step 8
If you use tape to keep the tube in place, do not tape over the same patch of skin
each time as this can irritate the skin. When you tape the tube, loop the tube loosely
and tape it to the skin.
Step 9
Wash your hands once again after you are all finished.
Tube Feeding at Home - A Guide for Families and Caregivers
May 2003
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Children’s and Women’s Health Centre of BC
Caring For The Mouth
•
•
•
•
Brush your child’s teeth at least twice a day. If the child is able, he or she
can do it.
Rinse your child’s mouth with water, mouthwash, toothette or cloth
throughout the day.
frequently
Put a lip moisturizer on the lips to keep them moist.
To help make saliva flow and keep the mouth clean and moist, a toothette1, Gum
Stimulator set, hand or a soother may be used.
1
Toothettes should not be used with children who have a strong bite reflex.
Tube Feeding at Home - A Guide for Families and Caregivers
May 2003
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Children’s and Women’s Health Centre of BC
Oral Stimulation During Tube Feeding
For children who cannot eat or drink by mouth, tube feeding does not mean
the end of pleasures associated with eating. Some children are able to take
small amounts of food.
It is easier to increase oral feeding than to completely restart it. Oral-motor
stimulation can be nutritive (with tastes) or non-nutritive. Your doctor can
tell you which is best for your child. Including an oral-motor stimulation
program at daily mealtimes will help create a positive approach.
Extended periods of tube feeding can contribute to reduced oral-motor skills.
Unpleasant procedures and experiences may result in oral aversion
(hypersensitivity and defensiveness around the face and mouth).
General Principles Of Oral-Motor Stimulation
1.
2.
3.
It should be fun and enjoyable for child and caregiver.
Incorporate into regular play times and during tube feeds.
If child does not tolerate or becomes stressed, stop and try again later at a
level of stimulation that s/he likes and slowly work at progressing
stimulation.
PLEASE USE THE FOLLOWING AS A GUIDE TO HELP YOUR CHILD:
Non-nutritive Oral-Motor Stimulation
1.
Pleasant touch around mouth area i.e. Cotton balls, terry cloth, soft
toothbrush, soft toys.
2.
Explore shapes and textures such as teething toys, own hands, nipples and
spoon, especially shapes that your child will eventually use to feed with.
3.
Massage should be firm but gentle on the upper body and face.
4.
During tube feeding times, encourage your infant to suck on a pre-pumped
breast or soother.
Nutritive Oral-Motor Stimulation
1.
Offer tastes of a variety of suitable foods/liquids. Some children enjoy
strong flavors.
2.
Dip soother, infant spoon or teething ring into milk or purees for child to
taste.
3.
Rub lips and gums with small amounts of food/liquid then place some
centrally on tongue to encourage sucking or tasting.
Tube Feeding at Home - A Guide for Families and Caregivers
May 2003
Sensory
stimulation is
also an
important part
of a tube
feeding.
Page 15
Children’s and Women’s Health Centre of BC
Transition From Tube To Oral Feeds
GENERAL INFORMATION:
•
•
•
•
It is very important that the child who is going to be moving from only
having tube feedings to oral feeds learn how to eat safely. The transition
from feeding a child through a tube to oral feeding is a process that usually
requires planning and support.
First, an experienced occupational therapist and/or speech-language
pathologist should assess a child’s eating and swallowing skills.
Once a child is starting to eat, a nurse and/or dietitian will provide support to
ensure that the process is going smoothly.
This is a very
individual
process and
needs careful
assessment
and planning.
This is a very individual process and needs careful assessment and planning.
If an occupational therapist or speech-language pathologist does not follow
your child, request a referral from the primary health care doctor before
starting to feed your child by mouth.
READINESS FACTORS TO CONSIDER PRIOR TO MAKING THE
TRANSITION FROM TUBE TO ORAL FEEDING:
1. The medical conditions(s) that resulted in tube feeding should be resolved or
stabilized.
2. Can your child eat safely and in a reasonable length of time?
Indications of an unsafe swallow may include:
• Inability to handle saliva/secretions
• Noisy, wet sounding breathing
• Multiple swallows to clear food
• Frequent unexplained respiratory illnesses
• Coughing/choking while eating or drinking
• Changes in their breathing while eating or drinking
Eg. Stops breathing, oxygen saturation changes, color changes
3. Nutritional readiness
• Can your child tolerate intermittent feeds?
• Is there sufficient weight gain to tolerate a possible small loss while
transitioning?
4. Behavioral readiness
• Is your child showing hunger cues?
• Is your child showing an interest in food?
5. Social factors
• Caregiver would need motivation, skills, time and support for successful
transition from tube to oral feeding
Tube Feeding at Home - A Guide for Families and Caregivers
May 2003
Page 16
Children’s and Women’s Health Centre of BC
Tube Feeding Schedules: Intermittent and Continuous
There are different types of feeding schedules used. Your schedule will depend on the
child’s nutritional needs as well as life style.
When the feeding tube is first put in, it is common for
tube feedings to begin as a slower continuous feed to
help the body get used to the formula then move to an
intermittent feeding schedule.
Different types
of feeding
schedules.
The feeding
schedule chosen
depends on your
child’s nutritional
needs as well as
lifestyle.
Intermittent Feedings
Intermittent feedings, sometimes called bolus feedings, are tube feedings
given over short periods of time several times throughout the day. These
feedings can be given by a pump or by gravity.
The timing of the tube feedings can be changed to allow 2 – 3 hours
between the end of one feed and the start of the next feed to allow time for
the stomach to empty. Intermittent feedings resemble the normal pattern of eating
and digestion.
Continuous Tube Feedings
Continuous feedings are given at a steady rate, for as many hours as
needed, over a 24-hour period to provide the energy and nutrition
required. A pump will be used to control the steady rate of these tube
feedings.
A feeding into the jejunum tube is usually given at a slow continuous rate
because, unlike the stomach, the small bowel is not able to hold large amounts of
formula. In certain situations a feeding into the stomach may also be given as a
continuous feed.
Combined Intermittent (bolus) and Continuous Tube Feedings
In some situations bolus tube feeds are given during the day and continuous tube
feeds at night.
Tube Feeding at Home - A Guide for Families and Caregivers
May 2003
Page 17
Children’s and Women’s Health Centre of BC
Tube Feeding Formula
There are more than 80 types of formula products available. The dietitian will discuss
with you the best type of formula for your child.
The dietitian
will discuss
with you what
the best type of
formula for
your child is.
Infants (0 - 12 months)
An infant under a year of age will usually receive expressed breast
milk and/or infant formula for the tube feeding.
Children (1 – 10 years old)
A child will usually receive a pediatric formula that is
made to meet the specific nutrient needs of this age
group.
Older children (over 10 years of age) and adults
Both the older child and adult will usually receive a formula that is
made to meet the specific needs of this age group.
Depending on the situation, the dietitian may recommend adding
vitamins and/or minerals to the formula as needed.
Tube Feeding at Home - A Guide for Families and Caregivers
May 2003
Page 18
Children’s and Women’s Health Centre of BC
Information about your child’s tube feeding supplies
1.
Tube feeding formula:
2.
Alternate formula:
Write your
child’s
information
here.
Keep this page for
your records.
3.
The brand, type and size of feeding bag and tubing to use:
4.
Type of adaptor
5.
Syringes
6.
Replacement feeding tube:
7.
Foley Catheter Size #_________ (in case tube falls out)
8.
If used, the brand of the pump:
9.
The formula and feeding bags can be obtained from:
† At Home Program
† Medical Supply Companies such as: _________________________________
† Home Enteral Nutrition Program
10.
Other details:
Supplies can be purchased from:
The Special Products Distribution Centre
Room A109
Children’s & Women’s Health Center of BC
4500 Oak Street
Vancouver, B.C. V6H 3N1
Telephone: 604-875-3020
Toll Free: 1-866-727-7759
Tube Feeding at Home - A Guide for Families and Caregivers
May 2003
Page 19
Children’s and Women’s Health Centre of BC
Write your
child’s
information
here.
Tube Feeding Schedule: Intermittent (Bolus) Feeding
1.
Keep this page for
your records.
Date:
Name:
Formula:
Size:
(i.e. ml)
=
containers/cans
Formula:
Size:
(i.e. ml)
=
containers/cans
Formula provides:
Kcalories
grams of protein/day
ml of free fluid/day
2.
Number of tube feedings each day:
3.
Amount of formula at each feeding:
4.
Amount of water flush before each feeding:
(use syringe to flush tube)
5.
Amount of water flush after each feeding:
(use syringe to flush tube)
6.
Give each feeding over:
minutes/hours or at the rate of:
7.
Goal for weight:
pounds
8.
Weigh and record your child’s weight every:
9.
Other pertinent information:
( see Feeding Schedule next page)
kilograms
days
(see Appendix A: page 50)
Phone the healthcare provider if you have
any questions about this schedule. This
includes questions about the amount of
formula, feeding times, and weight gain, etc.
Contact Name: ___________________
Phone : _________________________
Tube Feeding at Home - A Guide for Families and Caregivers
May 2003
Page 20
Children’s and Women’s Health Centre of BC
Tube Feed Schedule
Time of Day
Formula &
Amount
Water added to
feeding bag
Water flush
before and after
feeding
Medications
Water before
and after
medications
Tube Feeding at Home - A Guide for Families and Caregivers
May 2003
Page 21
Children’s and Women’s Health Centre of BC
Write your
child’s
information
here.
Tube Feeding Schedule: Continuous or Overnight Feedings
1.
Keep this page for
your records.
Date:
Name:
Formula:
Size:
(i.e. ml)
=
containers/cans
Formula:
Size:
(i.e. ml)
=
containers/cans
Formula provides:
Kcalories
grams of protein/day
ml of free fluid/day
2.
Start time(s) of tube feeding:
3.
End time(s) of tube feeding:
4.
Give each feeding over:
5.
Flush feeding tube with:
6.
Wash and rinse the tube feeding bag every four (4) hours throughout the day and night or use an alternate set of bag
and tubing. See page 27 for complete instructions.
7.
Goal for weight:
8.
Weigh and record your child’s weight every:
9.
Other pertinent information:
minutes/hours or at the rate of:
ml of water every:
pounds
hours
(use syringe to flush tube)
kilograms
days
(see Appendix A: page 51)
Phone the healthcare provider if you have any
questions about this schedule. This includes
questions about the amount of formula, feeding
times, and problems with weight gain, etc.
Contact Name: ______________________
Phone : _____________________________
Tube Feeding at Home - A Guide for Families and Caregivers
May 2003
Page 22
Children’s and Women’s Health Centre of BC
Giving Tube Feedings
GENERAL INFORMATION:
•
Wash your hands! Washing your hands can prevent the spread of illness!
Washing your hands is one of the most important steps you can take when
caring for your child’s tube feed.
When washing your hands please make sure you:
ƒ
ƒ
ƒ
ƒ
ƒ
•
•
•
•
•
•
Remove rings and watch. These can trap germs.
Use warm water and regular soap and rub all parts of your
hands and wrists. Friction is the best way to get rid of
harmful germs.
Wash for 30 seconds. Hint: Sing “Happy Birthday to
You” (the whole song) and 30 seconds will have passed.
Rinse well. Leave the taps running and dry your hands with
a clean towel.
Turn off the taps with the towel.
Store unopened containers of formula in a dry place at room temperature.
Check the expiry date stamped on the container and do not use formula after
the expiry date.
Store opened containers of formula in the refrigerator. Cover the top of the
container and label it with the date and the time it was opened. Storing
formula in the refridgerator will help to reduce bacterial growth that can
cause illness.
Throw out unused formula in opened containers after 24 hours.
Throw out any formula that has been open or hanging in a tube
feeding bag at room temperature for more than the hang times
recommended (See table on page 26).
Rinse and wash the bag and tubing, see page 27 for instructions on how to
do clean up. Equipment that is not carefully cleaned may contaminate the
formula and cause illness.
If possible, the child should be sitting upright in a chair or wheelchair at the
table during the feeding and for at least 30 minutes after the feed has
finished.
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Children’s and Women’s Health Centre of BC
•
•
•
•
If feeds are given in bed, make sure that the head of the bed is elevated 30
degrees during the feed and for at least 30 minutes after the feed has finished.
Flush the feeding tube with water before and after each bolus feeding and
when giving medications to prevent a blocked tube. If the child is 3 months
or younger, flush with sterile water.
Experience has shown that flushing the feeding tube with water every four
(4) hours during a continuous tube feeding will help to prevent a blocked
tube. If the child is 3 months or younger, flush with sterile water.
Do not add fresh formula to formula that is already hanging in the bag.
•
If using a pump, refer to the instruction booklet given on how to use
the pump.
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Children’s and Women’s Health Centre of BC
GETTING READY:
Step 1
Prepare a clean work area and wash your hands.
Step 2
Gather the equipment:
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
Feeding bag and tube
Tube feeding formula
30 – 60 cc Syringe
Lukewarm water or sterile water if the
child is less than 3 months old
If needed, a feeding adaptor or connector
for low profile devices.
IV pole, coat rack or hook/nail in the wall
A pump, if using.
ƒ
Other: ______________________
ƒ
Step 3
Wash your hands again before touching the equipment and
patient/child. Check the stoma for any leaking, skin irritation,
infection or swelling. If you notice any problems, refer to pages 43
& 44.
Step 4
Measure the feeding tube that is outside of the body and compare it
to the length measured before, see page 4. If it is shorter, gently pull
on it until it is the right length. If it is longer, DO NOT USE the
tube for feeding. Call the nurse or primary health care doctor.
Step 5
If you are reusing a feeding bag, check that it is clean and does not
have any leaks. If the bag smells sour, is cloudy , has a different
colour or just looks dirty, throw it away and use a new bag and
tubing.
Step 6
Rinse the top of the formula container with water and wipe dry.
Shake the container well.
Step 7
Open the container(s) of formula.
ƒ
If the container of formula has been in the refrigerator, allow
it to stand at room temperature for 15 – 20 minutes before
using or warm in a warm water bath. If the formula is too
cold, it may cause cramping.
ƒ
DO NOT USE the microwave to heat the formula because
this breaks down the proteins.
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Children’s and Women’s Health Centre of BC
Step 8
Close the clamp on the feeding bag tubing. If using extension
tubing, add it to the bottom of the feeding bag tubing.
Step 9
Fill the feeding bag with enough formula to be used within the
recommended hang time. Refrigerate unused formula in a clean
covered plastic or glass container or covered can. Mark the date
and time the container was opened. After 24 hours, throw out
any opened formula that has not been used.
Step 10
To prime the tubing (some infusion pumps will prime the tubing
for you): open the clamp and allow the formula to fill the tubing. Do
not fill the drip chamber more than ½ full.
Step 11
When the formula reaches the end of the tube tip, close the clamp.
Ask you health care provider how to plan for continuous feeds if that
is the schedule that is recommended for feeding your child. (If using
some of the pumps, this is not necessary. Refer to the pump
instructions).
Step 12
Using an IV pole, coat rack, hook or nail in the wall, hang the
feeding bag about 18 inches (46 cm) above the stomach.
Formula Hang Times
Type of formula
Ready to Serve
Formulas
Formulas prepared
from powder or
concentrate
Formula with additives
Fresh Expressed
Breast Milk
Previously Frozen
Expressed
Breast Milk
If re-using
bags and tubing
If not re-using
bags and tubing
Maximum 4 hours
Maximum 8 hours
Maximum 4 hours
Maximum 4 hours
Maximum 4 hours
Maximum 4 hours
Maximum 6 hours
Maximum 6 hours
Maximum 4 hours
Maximum 4 hours
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Children’s and Women’s Health Centre of BC
MEAL TIME:
Step 1
The child should be in a comfortable, upright position in a chair or
wheelchair. If this is not possible, the child can lie down on a bed
with the head of the bed or crib elevated 30 – 45 degrees. With
infants, cradling while holding the baby upright in your arms for
feeding may work best.
Step 2
Draw up _____ ml of lukewarm water into the syringe. Check to see
that the feeding tube is clear by flushing it with _____ ml of
lukewarm water. If the water does not go in, refer to page 33.
Step 3
Connect the feeding bag tubing to the adaptor, if used, and then to
the feeding tube.
Step 4
Open the clamp on the feeding bag tubing to allow a steady
drip. Suggested rate: _____. If a pump is being used, refer to
the instructions on how to use the pump.
FINISHING UP:
Step 1
After the formula has finished, close the clamp on the feeding bag tubing
and disconnect it from the feeding tube.
Step 2
Using the syringe, draw up _____ ml of lukewarm water. Use
sterile water if your child is less than 3 months of age. Flush the
feeding tube. Close the clamp on the feeding tube.
Step 3
First, rinse the feeding bag and tubing with cool clean water. Then, wash
the feeding bag and tubing (and adaptor or connector if used) with hot
soapy water. Use a bottlebrush to get the corners of the bag to remove old
formula and prevent bacterial growth. Rinse well with hot water.
Step 4
Shake really well to remove excess water from the feeding set. The goal
is to remove as much water as possible from the inside of the bag. Wrap
the feeding set in a clean, dry towel and store it in the refrigerator.
Storing the bag and tubing refrigerated will help reduce bacterial growth.
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Children’s and Women’s Health Centre of BC
Step 5
After the last feeding of the day, wash and rinse the feeding bag and
tubing as described in Step 3 and Step 4. Many families find it
convenient to alternate using 2 sets of feeding bags and tubing. While
one is being cleaned the other one is ready for use.
You must clean the feeding bag and set AT LEAST once a day.
Step 6
With good cleaning feeding bags and tubing may be changed twice a
week.
Never use the bag if it smells sour or is cloudy or “looks dirty”.
If a pump is used, the feeding set tubing may stretch over time and
will not infuse the formula at the desired rate. If this happens,
replace the bag and tubing set.
Note Well: Current recommendations from the manufacturers
state that the feeding set is to be changed everyday.
By keeping this equipment extremely clean, it is both practical
and economical to change supplies less frequently. Keeping the
supplies clean prevents bacterial growth which can cause
serious illness. Ask your health care provider for more
information.
FEEDING ADAPTORS:
Low profile feeding adaptors and connectors are usually changed every 4 weeks.
Wash adaptors and connectors in the same way as a feeding bag and tubing is
cleaned.
SYRINGES:
•
At least once a day take syringes apart (separate the barrel and from the
plunger) and cleaned in warm, soapy water. Rinse well with hot water.
•
Allow syringes to air-dry on a clean surface between uses.
•
Change syringes twice a week.
Tube Feeding At Home - A Guide for Families and Caregivers
Syringes are
changed twice
a week.
May 2003
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Children’s and Women’s Health Centre of BC
Giving Medications through a Feeding Tube
GENERAL INFORMATION:
•
•
•
•
•
•
•
•
The tube may be used to give medications. However if the child is able to
take medications by mouth, use this route.
Not all medications can be safely given with a feeding tube. Check with the
primary health care doctor or nurse. If possible, give medications by mouth.
Do not mix medications with the formula.
If possible,
give
medications by
mouth.
NEVER mix other medications with antacids or vitamin supplements
containing iron, calcium or magnesium.
Give each medication separately with water flushes between each
medication.
Give medications as directed by the primary health care doctor or
pharmacist.
Use liquid medications when possible to avoid blocking the feeding tube.
Dilute thick liquid medications such as Phenytoin, Docusate, Lactulose or
certain antibiotics with 5 – 10 ml of water.
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Children’s and Women’s Health Centre of BC
GIVING MEDICATION:
Step 1
Wash your hands.
Step 2
Gather the following items:
ƒ
ƒ
ƒ
ƒ
Step 3
Medication (liquid or tablet)
2 clean syringes: one to check position of the tube and for
water flushes, and the other one for medications
Lukewarm tap water in a large cup (use sterile water if the
child is less than 3 months of age)
Utensil or device for crushing pills
If the medication is a liquid, go to Step 4. If medication is not
liquid read below before going to Step 4.
ƒ
ƒ
If the medication is a tablet, ask the pharmacist if the
medicine can be crushed. If yes, then crush the tablet to a
fine powder. Dissolve the powder in one tablespoon of
warm water or as directed by your health care provider. If
the medication cannot be crushed, ask the pharmacist if it
comes as a liquid.
Liquid
‹
Tablet
For a small infant try to use the least amount of sterile water
– use just enough to dissolve the powder.
Step 4
Draw up _____ ml of lukewarm water into the syringe for water
flushes. Use sterile water if the child is less than 3 months of age.
Step 5
Draw up the right amount of prepared medication into the second
syringe.
Step 6
Check the position of the feeding tube by measuring the length. If it
is shorter, gently pull on it until it is the right length. If it is longer,
DO NOT USE the tube for feeding. Call the nurse or primary health
care doctor.
Step 7
Attach the water-filled syringe to the feeding tube. Open the feeding
tube and flush it with _____ ml.
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Children’s and Women’s Health Centre of BC
Step 8
Attach the syringe with medication to the feeding tube and push the
medication into the tube.
Step 9
Draw up _____ ml of water into the water flush syringe and attach it
to the feeding tube. Flush the feeding tube.
Step 10
To give more than one medication, put each medication into a
separate syringe and follow Steps 7-9 for each medication.
Step 11
Remove the syringe (and tubing adaptor, if used) and clamp the
feeding tube.
Step 12
Wash the syringes and adaptor in warm, soapy water. Separate the
plunger from the barrel of the syringe to wash. Rinse with hot
water and place them on a clean surface to air-dry.
Flushing well before and after each medication
will help to prevent blocking the feeding tube!
A Note About Flushes:
The amount of water used for flushes can quickly add up. This is an important factor
with small babies, especially if there are fluid restrictions. Before you leave the
hospital decide with your health care provider the amount of water to use for flushes.
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Children’s and Women’s Health Centre of BC
Preventing and Solving Problems
(Alphabetical Order)
ASPIRATION
Aspiration occurs when stomach contents (formula or water) enters the
lungs. It is a very serious problem as it can cause breathing problems
and infection.
Signs
Signs of aspiration:
•
•
•
•
Prevention
Coughing and/or choking while given the feed
A change in breathing pattern to difficult, noisy breathing or
rapid shallow breathing
Wet, gurgly voice
Pale or bluish lips
To prevent:
•
Sit upright or raise the head of the bed 30 to 45 degrees during
each feeding and for 30 to 60 minutes after the feeding is
finished.
If you think aspiration has occurred:
•
Stop the feeding right away.
•
Ensure the individual is sitting upright and that the airway is
clear.
•
For babies, it may be helpful to position lying them on their
side with their head and neck in a neutral position.
•
If the individual does not improve after taking these steps, call
an ambulance (911) right away.
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Children’s and Women’s Health Centre of BC
BLOCKED FEEDING TUBE
A blocked feeding tube can occur when:
Prevention
•
The tube is not flushed
•
Formula is too thick
•
Residue builds up in the tube
•
Medications are too thick
To prevent:
Prevention is the key!
Flush ‹ Flush ‹ Flush
•
Flush tube with warm water before and after feeds and medications
•
Crush all medications to a fine powder and dissolve in a small amount
of warm water
What to Do
If the tube blocks:
•
Use a 30 – 60 cc syringe to gently push 20 mls of warm tap water
through the tube.
•
For infants less than 3 months of age use sterile water and push up to
10ml of warm sterile water through the tube.
•
If this does not open the tube, flush with the water and then pull back
on the syringe’s plunger while it is connected to the tube. Repeat this
3 – 4 times.
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Children’s and Women’s Health Centre of BC
If using warm water does not unclog the tube then try
Pancreatic Enzymes to clear:
1. Assemble Equipment
a. Cotazyme Capsule (pancreatic enzyme)
b. Sodium Bicarbonate – 1 tablet (325mg) crushed to a fine powder
OR ½ teaspoon of Baking Soda
c. Warm Water or Sterile Water for infants less than 3 months of age
d. 60 ml syringe
e. small cup
2. WASH hands
3. Draw back as much of the contents of the blocked tube into the syringe
as possible.
4. Place the contents of an opened Cotazyme capsule and a crushed
Sodium Bicarbonate tablet or ½ tsp of Baking Soda into a cup. Add 10
– 15ml of warm water and dissolve both medications thoroughly.
5. Draw up the dissolved solution into the 60ml syringe and place it into
the tube. Clamp off the tube for 15 – 30 minutes. Milk the tube to get
the solution as close as possible to blocked area.
6. Unclamp the tube and attempt to flush again with warm water and firm
pulling and pushing action. If the tube does not become clear, repeat
above steps, leaving the solution for up to one hour.
7. If two attempts do not clear the tube then it most likely will need to be
replaced.
•
If this does not work, contact the nurse or primary health care
doctor for further instructions.
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Children’s and Women’s Health Centre of BC
CONSTIPATION
Constipation means that the bowel movements are hard and difficult to
pass and occur less often. Each child has his or her own pattern. Some
children have one or more bowel movements each day. Others have a
bowel movement once every few days. Infants and children who are on
tube feeds may not have the same pattern as children who eat orally.
Prevention
To prevent:
•
•
Make sure the recommended amount of water flushes are
given.
Encourage daily physical activity.
If constipation occurs:
•
Ask your health care team contact if :
•
a different formula or more water or diluted prune juice may
be needed?
•
any medications might be the cause?
•
medications might be needed to help?
Contact the nurse, dietitian or primary health care doctor if:
•
Bowel movements are uncomfortable – they hurt.
•
Tube feedings are causing bloating, feeling full.
•
No bowel movement for more than 3 – 4 days.
•
A small amount of bleeding with bowel movements.
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Children’s and Women’s Health Centre of BC
DEHYDRATION
Dehydration means that the body does not have enough fluids.
Dehydration can be caused by:
•
•
•
Signs
Vomiting
Diarrhea
Sweating – this can be due to hot weather and/or fever
Signs of dehydration include:
•
•
•
•
•
•
•
Prevention
Dry, sticky tongue
Sunken eyes
Cracked, dry lips
Thirst
Small amounts of dark yellow urine
Fewer wet diapers
Depressed or sunken fontanelle (soft spot on the head) of
infants
To prevent:
•
Make sure that the recommended amounts of formula and
water flushes is given each day.
If you think dehydration has occurred:
•
•
•
Babies can become dehydrated very quickly. If you think your
baby is dehydrated then contact your health care provider
immediately. Talk with the doctor or nurse before increasing
amount of water flushes.
Increase the amount water flushes given before, during and
between feedings.
Contact the primary health care doctor or nurse if the
symptoms continue for more than _____ hours.
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Children’s and Women’s Health Centre of BC
DIARRHEA
Diarrhea is frequent, watery bowel movements. Check for signs of
dehydration and follow guidelines. See page 37.
Prevention
To prevent:
•
•
•
•
•
•
•
Give the formula at the recommended rate.
Make sure all tube-feeding supplies are clean.
Wash your hands well before giving the tube feeding.
Make sure the instructions on storing the formula are followed.
See page 25.
Do not hang formula for more than the recommended time (see
page 26).
Do not use formula that has been in the refrigerator for more
than 24 hours or that has past the expiry date on the container.
Ensure the formula is at room temperature before giving.
If diarrhea occurs:
•
Call the nurse or primary health care doctor if there are more
than 5 watery bowel movements in 24 hours. He/She may
suggest a temporary change in the tube feeding for a few days.
•
If the diarrhea is severe – large amounts of loose stools every
1 to 2 hours, call the primary health care doctor if it continues
for longer than:
ƒ
ƒ
ƒ
•
4 hours in an infant under 3 months of age
8 hours in an infant age 3 – 6 months
1 – 2 days in a child age 7 months to 4 years
Check the child’s temperature to make sure he or she is not ill.
A fever is an oral temperature above 37.4˚C (99.4˚F).
continued…
Tube Feeding at Home - A Guide for Families and Caregivers
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Children’s and Women’s Health Centre of BC
•
Call the primary health care doctor whenever :
ƒ
the temperature is 38.5 C (101.3 F) or higher, or
ƒ
the temperature is between 37.4 C (99.4 F) and 38.5
C (101.3 F) and the child has had diarrhea for more
than 2 days
•
Keep a daily record of the number of bowel movements and
other symptoms and when they occur.
•
If your child is receiving chemotherapy or is neutropenic and
develops a fever, then contact your doctor or oncologist on call
(even if there are no skin signs).
•
Try a slower feeding rate. If the feedings are not tolerated at
the recommended rate after 48 hours, call the physician or
health care provider.
•
Ask the health care provider if:
•
a different formula might help?
•
any of the medications taken might be causing diarrhea.
Tube Feeding at Home - A Guide for Families and Caregivers
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Children’s and Women’s Health Centre of BC
FEEDING TUBE FALLS OUT
Prevention
To prevent:
Follow the instructions on page 10 to help keep the tube in place.
If the tube falls out:
G – Tubes:
•
Cover the stoma with a clean gauze.
•
If this is a brand new G tube and has been in for less than 6
weeks, go to the nearest hospital emergency department as
soon as possible. The tube needs to be replaced by a health
care professional before the stoma shrinks closed.
•
If the tube has been in for more than 6 weeks, there is a need
to replace the tube as soon as possible.
•
If you have been taught to reinsert the tube, follow the
instructions in Appendix E, page 56.
J – Tubes and G-J Tubes:
•
If this is a G-J tube you need to insert your replacement G tube.
•
If you have been taught to reinsert the tube, follow the
instructions in Appendix E, page 56.
•
If your child can tolerate food or medications into their
stomach, then use this tube until you can make an appointment
with the radiologist to replace the G-J tube.
•
If your child cannot tolerate food or medications through the
replacement G tube then you will need to take your child to the
hospital for IV fluid and medications.
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Children’s and Women’s Health Centre of BC
FLUID AROUND THE TUBE
Prevention
To prevent:
•
•
•
•
Make sure the correct flow rate and volume of formula is given.
Make sure the tube is securely taped to prevent pivoting action
or pulling on the stoma. Do not tape low profile devices.
Check for granulation tissue around the tube.
Make sure the feeding tube is not blocked – flush with water
frequently.
If leaking occurs:
Gastrostomy or JejunostomyTubes (PEG, MIC or J –tube):
ƒ
ƒ
ƒ
Check to see if the tube is blocked, the stoma is larger
or the tube has moved in or out – measure the tube.
Call the nurse or primary health care doctor for advice.
If the tube has a balloon internal bumper (MIC tube or
MIC-KEY) and you have been taught to do so, check
that the balloon is properly inflated.
Try to keep the area as clean and dry as possible, if
necessary, use zinc oxide or gauze to protect the skin
around the stoma.
Low Profile Device (Bard Button; MIC-KEY):
ƒ
Check to see if the tube is blocked, the stoma is larger
or if the tube has moved in or out.
ƒ
Check once a week to make sure the balloon has
enough water.
ƒ
If your child has a balloon internal bumper type tube
(MIC tube or MIC-KEY), and you have been taught to do
so, check that the balloon is properly inflated with
ml of sterile water.
Tube Feeding at Home - A Guide for Families and Caregivers
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Children’s and Women’s Health Centre of BC
FLUID LEAKING THROUGH THE TUBE
Sticky, sugar containing formula or medications can interfere with the one
way (anti-reflux) valve. Flush frequently with water through the adaptor.
Prevention
To prevent:
Low-profile devices:
ƒ
ƒ
Do not leave the adaptor or connector attached after the
feed as it keeps the valve open.
Always use the feeding adaptor. Never put a syringe
directly into the feeding tube. The pressure from the
syringe can break the anti-reflux valve.
If leaking occurs:
Bard Button:
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
The anti-reflux valve in the button may be stuck open or
the valve may be broken.
Using the adaptor, flush the tube several times using
warm water to try to unstick the anti-reflux valve.
If this does not work, gently insert a #8 or #10 French
Foley catheter or decompression tube into the shaft of
the button to see if it can move the valve back to the
closed position. The anti-reflux valve should make a
popping sound when closing and the leaking should
stop.
Repeat this several times.
If this does not stop the leaking, the valve may be
broken and the button will need to be replaced.
Call your nurse or primary health care doctor to help you
arrange this.
MIC-KEY:
ƒ
ƒ
Using the adaptor, flush with warm water using a 30 ml
slip-tip syringe.
If this does not stop the leaking, the device may need to
be replaced. If you have been taught to replace this
device, refer to page 56. If not, call the nurse or
primary health care doctor.
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Children’s and Women’s Health Centre of BC
GRANULATION
“Granulation” tissue or sometimes called proud flesh is a type of scar tissue
that may form around the tube. This red, raised tissue is the body’s reaction
to the tube and is very common in some children.
Granulation is a nuisance. It can rub on clothing and bleed easily and often
leaks a sticky yellow fluid. This is not dangerous.
Treatment
If granulation tissue occurs:
•
Call the nurse or primary health care doctor to ask about silver
nitrate stick, that can help to remove the granulation tissue.
When touched by the silver nitrate stick, the granulation tissue
turns grey or black, then becomes crusty and falls off.
Steps for using silver nitrate sticks.
Note: Repeat the following steps once each day for 7 days:
•
Step 1
Put a layer of Petroleum jelly (Vaseline) on the healthy
skin around the piece of red skin before using the silver
nitrate stick. Be careful not to touch normal, healthy skin
with the stick as it will injure the healthy skin.
Step 2
Gently touch the silver nitrate onto the piece of red skin.
Step 3
Protect clothing from being stained by the silver nitrate
(can turn black) by putting a small gauze square over the
area and taping it.
If there is no improvement after 7 days, call the nurse or
primary health care doctor.
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Children’s and Women’s Health Centre of BC
Skin INFECTION Around the Tube or Stoma Site
Signs
Signs of skin infection may include:
•
•
•
•
•
What to do
Skin is fiery red, hot and swollen
Discharge from the stoma is thick and cloudy with a white or yellowgreen colour
Skin hurts a lot and all the time
Fever (temperature above 37.4˚C or 99.4˚F)
Stoma area smells bad
If a skin infection occurs:
•
•
Call the primary health care doctor.
Soak the skin around the stoma 4 times a day for 5 to 10 minutes
each day.
10 Steps for soaking the skin around the stoma:
How to make Salt Water
Step 1
1. Boil 1 cup of water for 10
minutes.
2. Add ½ teaspoon of salt to
the boiled water and let cool.
Step 2
Step 3
Step 4
Step 5
Step 6
Step 7
Step 8
Step 9
Step 10
Gather the equipment needed:
ƒ 3 sterile gauze squares (2 packages)
ƒ clean bowl
ƒ Salt water (see recipe in box) or Normal Saline
(sterile salt water).
Clean the work surface.
Wash your hands.
Pour the warm salt water into the clean bowl.
Open the package of gauze and drop into the bowl of salt
water.
Lift one wet gauze and place over the stoma area. Leave it
there for 5 minutes.
Repeat Step 5 another 3 times using a new gauze square
each time.
Let the skin air dry.
If the primary health care doctor has ordered an antibiotic
cream, put it on now.
If there is a lot of leaking around the tube, cut a gauze
square to fit around the tube. Use a small amount of tape to
keep the dressing in place.
Tube Feeding at Home - A Guide for Families and Caregivers
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Children’s and Women’s Health Centre of BC
Skin IRRITATION Around the Tube or Stoma Site
Signs
Signs of skin irritation may include:
•
•
•
•
The skin is redder than normal and raw looking
There is a watery, thin discharge
The skin is tender to touch
Skin irritation may be caused by leakage around the tube.
Prevention
To prevent:
•
•
Make sure that the tube is stable so that it does not move
around
Gently pull on the tube to ensure that the balloon/end of the
tube is up against the stomach wall. If you have been taught to
do so, check the amount of water in the balloon.
If a skin irritation occurs:
•
Keep the area clean. Wash with mild soap and warm water 3 –
4 times each day and pat dry.
•
Expose the skin to air for about 30 minutes at least 3 times a
day.
•
Ensure the tube is secure with tape and there is no pivoting
action of the G-tube.
•
If there is a lot of leaking around the tube, cut a gauze square
to fit around the tube. Use a small amount of tape to keep the
dressing in place.
•
Call the nurse or primary health care doctor if this does not
clear up within 3 days. Use of a cream may be suggested.
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Children’s and Women’s Health Centre of BC
STOMACH FULLNESS/BLOATING
Stomach fullness and bloating may be caused by:
•
•
Signs
Feeding is given too quickly
Swallowing air
Signs of stomach fullness/bloating may include:
•
•
The child may have pain or discomfort in the abdomen or be
restless and cry.
A child who is unable to communicate may vomit or burp.
Please note:
•
•
Prevention
Sometimes a bloated, full feeling may indicate constipation.
See page 35 for tips on constipation.
To prevent:
•
Follow the feeding guidelines for the type of formula, rate and
schedule
If fullness or bloating occur:
•
Decrease the feeding rate.
•
Stop the feeding for 1 – 2 hours and then restart the feeding at a
slower rate. Slowly increase the rate to the highest rate that is
comfortable. If the usual rate cannot be reached, call the health
care provider.
•
Try to decompress the stomach before feeding. Attach the outside
only (barrel) of a 30 ml syringe to the end of the feeding tube or,
for the low profile devices, attach it to the adaptor. Hold the
syringe barrel above the stomach to allow gas to escape for about
5 to 20 minutes. If stomach juices come into the syringe, allow
the juices to flow back, by gravity, into the stomach to prevent the
loss of electrolytes.
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Children’s and Women’s Health Centre of BC
VOMITTING
Vomiting or gagging may be caused by:
•
•
•
Prevention
Stomach is too full
Feeding is given too quickly
Illness
To prevent further vomiting:
•
Start feeding slowly. If your child tolerates the feed, slowly
increase the rate to desired rate.
•
Position the child in a sitting position in a chair or in a
wheelchair or with the head of the bed elevated.
•
Allow a quiet time after feeds.
•
Vent the tube or burp the child before, during and/or after the
feeding. Try to decompress the stomach before feeding.
ƒ
ƒ
ƒ
Attach the outside only (barrel) of a 30 ml syringe to
the end of the feeding tube or, for the low profile
devices, attach it to the adaptor.
Hold the syringe barrel above the stomach to allow
gas to escape for about 5 to 20 minutes.
If stomach juices come into the syringe, allow the
juices to flow back, by gravity, into the stomach to
prevent the loss of electrolytes.
•
When flushing the tube, do it slowly.
•
If vomiting occurs during a feed, stop the feed. If the child is
lying down, turn the head to the side or have them sit up.
•
If the vomiting continues and the child seems ill or has a fever,
call the nurse or primary health care doctor.
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Children’s and Women’s Health Centre of BC
Who to Contact with your Questions & Concerns
Questions Or Concerns About
Contact
Weight:
•
•
•
Dietitian
Nurse
Primary health care doctor
Tube feeding supplies:
•
•
•
Nurse
Dietitian
Community Liaison Nurse (AHP
Formula:
•
Dietitian
•
Primary health care doctor
Feeding tube or feeding tube site care:
•
Nurse
Skin problems:
•
•
Nurse
Primary health care doctor
Tube Feeding at School or Daycare:
•
Nursing Support Services
Feeding pump:
•
Pump rental store or company
•
At Home Program
Oral stimulation during tube feeding:
•
•
Occupational Therapist
Speech-Language Pathologist
Oral Feeding:
•
•
•
•
•
•
Dietitian
Occupational Therapist
Speech-Language Pathologist
Primary health care doctor
Nurse
Feeding Team
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Children’s and Women’s Health Centre of BC
Telephone Numbers
Contact
Name
Phone Number
Dietitian
Nurse
Nursing Support Services
Primary health care doctor
Occupational Therapist
Speech-Language
Pathologist (SLP)
Nurse Clinician
Distribution Center
(AHP/HEN)
Other:
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Children’s and Women’s Health Centre of BC
Appendices
Tube Feeding at Home - A Guide for Families and Caregivers
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Children’s and Women’s Health Centre of BC
Appendix A: Monitoring Progress
Date
Weight
Feeding Schedule
Tube Feeding at Home - A Guide for Families and Caregivers
Concerns/Questions
May 2003
What to Do?
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Children’s and Women’s Health Centre of BC
Date
Weight
Feeding Schedule
Tube Feeding at Home - A Guide for Families and Caregivers
Concerns/Questions
May 2003
What to Do?
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Children’s and Women’s Health Centre of BC
Appendix B: Ongoing Questions & Concerns
“How to make the best use of clinic
visits or appointments with your
child’s health care team.”
You will have more questions and concerns come up over time.
Here are some tips on how to make sure that you have them
answered.
At home:
•
Keep a journal of your questions and concerns.
•
If you want to talk with a certain person at the clinic or
office, call ahead to make a set time.
•
Ask a family member or friend to come with you to take notes,
offer support, or help care for your child while you talk to the
health care team.
At the clinic or appointment:
•
Ask your most important questions early in the appointment
•
Take notes to help you remember what was said.
•
Let the team know as much as you can about your thoughts on
your child’s health and how your child is doing with the tube
feeding – you know your child best!
•
If you do not understand the medical words used – ask.
•
Sometimes a picture can help you to understand what is being
said – ask for one.
•
Repeat what you think was said to you.
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Children’s and Women’s Health Centre of BC
Appendix C: List of Terms
Abdomen
contains the stomach, small and large intestines, liver, gall bladder,
spleen, pancreas, and bladder
Aspiration
occurs when fluid enters the lungs
Abscess
a localized collection of pus in a tissue or body part resulting from
the invasion of bacteria
Decompression tube
a device which allows air/fluid to escape (venting) from the stomach
via a gastrostomy tube
Gastric decompression
release of air trapped in the stomach
Gastric outlet obstruction
blockage at the end of the stomach
Gastric tube (gastrostomy tube,
G-tube)
a feeding tube that supplies food directly into the stomach through a
permanent surgical opening (gastrostomy) made into the stomach
Gastro-jejunal tube (GJ tube)
a feeding tube that passes through the stomach via the gastrostomy
into the jejunum.
Granulation tissue (proud flesh)
naturally occurring scar tissue that forms around the tube
Gavage
feeding by a tube passed into the stomach
Ileus
An intestinal obstruction or blockage
Jejunal tube ( j-tube)
a feeding tube that supplies food directly into the small intestine
through a surgical opening (jejunostomy) made into small intestine
Jejunum
the second portion of the small intestine (small bowel)
Laparascopy
surgical procedure that explores the abdomen using a type of camera
called a laparascope
Laparotomy
the surgical opening of the abdomen
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Children’s and Women’s Health Centre of BC
Nissan fundoplication
An operation that is used in the treatment of stomach acid reflux into
the esophagus
Peristomal
skin area around the stoma
Pyloroplasty
this is an operation where the pylorus muscle is partially divided
allowing the food to move more easily from the stomach to the small
intestine
Reflux
backward flowing of a substance (e.g. return of fluids to the mouth
from the stomach)
Roux en y
surgical procedure that takes a portion of the jejunum and creates a
limb that forms the stoma for the jejunostomy tube
Stoma
an artificial opening
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Children’s and Women’s Health Centre of BC
Appendix D: Additional Resources for Families &
Caregivers
Books
Videos
Websites
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Children’s and Women’s Health Centre of BC
Appendix E: Reinserting a Gastrostomy Tube (G-Tube)
GENERAL INFORMATION:
•
•
The PEG tube or Bard button low profile device cannot be reinserted. Instead, use the Foley catheter
given to you by the hospital.
Foley cathetor, MIC tube or MIC-KEY can be reinserted as follows:
ƒ
Check the balloon for leaks by inflating
the balloon with 5 ml of sterile water. If
no leaks, deflate the balloon and
proceed to inserting the tube as
described below.
ƒ
If there are leaks, throw away the tube
and check the balloon on a new tube.
ƒ
If there are no leaks, remove the 5ml of
water from the balloon and insert the
tube as described below.
Figure 10: Foley Gastronomy Tube
REINSERTION:
Step 1
Wash hands well and gather the following equipment:
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
feeding tube or Foley cathetor
tape
5 ml syringe – to inflate the balloon
5 ml water – to inflate the balloon
measuring tape (if a balloon-type catheter is used)
water-soluble lubricant
tape measure
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Children’s and Women’s Health Centre of BC
Step 2
Draw up 5 ml of water into the syringe.
Step 3
Check the balloon on the new feeding tube before putting it into the stoma by inflating it with
the water.
Step 4
Deflate the balloon by pulling the water back into the syringe.
Step 5
Moisten the end of the tube with water or a water-soluble lubricant (for example, K-Y jelly)
as it makes the tube go in easier.
Step 6
Insert the new tube about 2 inches into the stoma.
Step 7
Inflate the balloon with the 5 ml of water in the syringe. Remove the empty syringe from the
tube.
Step 8
Gently pull on the tube so it is snug against the stomach wall.
Step 9
If a catheter is used, measure the length of the catheter from the stoma to the end and record
the length. Put a mark on the tube where it comes out of the body.
Step 10 Clean and dry the skin. Tape the tube to the skin to secure.
Step 11 Check the placement of the tube by withdrawing stomach contents, allow the contents to flow
back into the stomach.
Step 12 If unable to withdraw stomach contents, reposition the person and try again. If no stomach
contents, wait ½ hour and try again. If you are not sure that tube is in the stomach, do not
use. Call the nurse or primary health care doctor.
Tube Feeding at Home - A Guide for Families and Caregivers
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Children’s and Women’s Health Centre of BC
Appendix F: Reinserting a Jejunostomy Tube (J-Tube)
GENERAL INFORMATION:
•
•
If using a Foley catheter as a jejunostomy tube, DO NOT inflate the balloon on the catheter as it may
block the small bowel causing an obstruction.
Never force the tube. If it is difficult to insert, stop and go to the nearest hospital since repeated tries
with force may put a hole in the small bowel.
REINSERTION:
Step 1
Wash hands well and gather the following equipment:
ƒ
ƒ
ƒ
ƒ
feeding tube
tape
measuring tape
water-soluble lubricant
Step 2
Moisten the end of the tube with water-soluble lubricant (for example, K-Y jelly) as it makes
the tube go in easier.
Step 3
Insert the new tube about 2 inches into the stoma or as per instructed. Tape the tube securely
to the stomach.
Step 4
Measure the length of the catheter from the stoma to the end and record the length. Put a
mark on the tube where it comes out of the body.
Step 5
Phone your nurse of primary care doctor to help make arrangements to have the tube
replaced.
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Children’s and Women’s Health Centre of BC
References
1.
Alberta Home Nutrition Support Services (2000). Nasogastric Tube Feeding Your
Child: A Resource Booklet for Families. Capital Health Region.
2.
Anderton, A. & Nwoguh, CE. (1991). Re-use of enteral feeding tubes-a potential
hazard to the patient? A study of the efficiency of a representative range of cleaning
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3.
Anderton, A. & Aidoo, KE. (1990) The effect of handling procedures on microbial
contamination of enteral feeds: A comparison of the use of sterile vs non-sterile
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4.
Aneiros, S & Rollins, H. (1996). Home enteral tube feeding. Community Nurse. 2833.
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BC Women’s and Children’s Hospital (1998). Gavage/Enteral Feeding (Nasogastric,
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Brooks, L (2002) Clearing Occluded Feeding Tubes: Moving from Ginger Ale to
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#20:8
7.
Campbell, SM. (1995). Preventing Microbial Contamination of Enteral Formulas and
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8.
Children’s Hospital of Eastern Ontario. (1998). Home Enteral Feeding Programme:
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9.
Children’s Hospital of Eastern Ontario. (1998). MIC-KEY Skin Level Feeding Device:
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11.
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12.
Children’s Hospital of Eastern Ontario (1998). Jejunostomy Tube Feeding: Teaching
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13.
DaSilva, B. (2000). Summary of Tube Feeding Practice. Member of the
Vancouver/Richmond Regional Tube Feeding Committee.
14.
Frankel, E et al, (1998) Methods of restoring patency to occluded feeding tubes
Nutrition in Clinical Practice 13:129-131
15.
George Pearson Centre (2000). Guideline for Gastrostomy Care and Management.
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Grant, M.C. & Martin. S. (2000). Delivery of enteral nutrition. AACN Clinical Issues,
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Grunow, JE, Cristenson, JC, & Moutos, D. (1989). Contamination of enteral nutrition
systems during prolonged intermittent use. Journal of Parenteral and Enteral
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18.
Guenter, P. & Silkroski, M. (2001). Tube Feeding: Practical Guidelines and Nursing
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19.
Health Canada (1998). Infection Control Guidelines: Hand Washing, Cleaning
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HSCL (1996). Module 8 – Gastrostomy Care. HSCL Resource Guide.
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Kemper, D.W. (2000). BC Health Guide. Idaho: Healthwise Publications.
22.
Lee, C.H., & Hodgkiss, I.J. (1999). The effect of poor handling procedures on enteral
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Matergio, D (2002) Backing up our Practice with a Simple Study Practice – Dietitions
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Oie, S. & Kamiya, A. (2001). Comparison of microbial contamination of enteral
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Patchell, C. J., Anderton, A., Holden, C., Macdonald, A., George, R. H., Booth, I. W.
(1998). Reducing bacterial contamination of enteral feeds. Archives of Disease in
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Ross Products Division (1999) Best Practice Guidelines for Tube Feeding: A
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Smarszcz, RM, Proicou, GC, & Dugle, JE. (2000). Microbial contamination of lowprofile balloon gastrostomy extension tubes and three cleaning methods. Nutrition in
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Swalwell-Franks, A. (2001). Common Tube Feeding Complications Handout for
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Taylor, L.J. & Fona, S.H. (1997). Caring for the patient with a
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Thompson, L. (1995). Taking a closer look at percutaneous endoscopic gastrostomy.
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Vancouver/Richmond Regional Tube Feeding Committee (2001). Changing Feeding
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Tube Feeding at Home - A Guide for Families and Caregivers
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Children’s and Women’s Health Centre of BC
Information Compiled by:
Linda Yearwood, RN, MSN
Sincere thanks to the many contributors and
reviewers who gave so generously of their time.
The following groups were involved in completing
this project:
C&W Nutrition Committee
Feeding Team at Sunny Hill
Gastroenterology
Nursing Support Services
Nutrition and Food Services
Occupational Therapy
Pediatric Surgery
Special Care Nursery
Financial Assistance Gratefully Provided by:
Sunny Hill Health Centre for Children Auxiliary
Tube Feeding at Home - A Guide for Families and Caregivers
May 2003
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